Starting Chemo April 2009

BetsyBuzz

Judy - sorry I didn't respond earlier. Yes, I am still having problems eating. I use my mouth as a barometer - if it hurts I don't eat it. I haven't been taking any acid reducers lately. I did read prior to chemo that permanent acid reflux can happen. I hope that is not the case for you or me...or anyone else for that matter.

I am still waiting on introducing acidic foods as I know I am still feeling other SE's of chemo. I figure this is just a different type of slow food movement. Yes...it is testing my patience but I feel so much better I don't care. Eventually, the digestive cell kill will heal.

ljh58 - as I said on the Rad board...now this is a study I can embrace. Not that I can drink red wine yet (my favorite) but white wine...very clear with lots of ice...works. And since RADs are in the treatment plan for me I'm happy to be the guinea pig on this study.

Titan

Yay on the wine drinking...and radiation is EVERY DAY!  And then on weekends we can relax with wine!

You people that aren't going through rads are missing out! 

Anonymous

Yay to wine!!  I couldn't WAIT until I was able to drink it again after chemo . . . and then on weekends during rads . . . and once they are done, whenever the heck I want to!!!

BetsyBuzz

Judy - ljh58 is right it is the worst indigestion and pain I've ever had. I did not want to eat. I'm still eating fairly small portions which helps. Thankfully, mine has mostly subsided except when I eat acidy foods. That's why I'm staying clear for a while. Hopefully, nature will heal everything chemo destroyed. If you are still having the intense pain, I would keep pressing your dr. for solutions.

ljh58 - I could embrace the choc study too! I like the way your mind thinks!!!

Everyone have a great day. To those of you still struggling...the end is not far and we are waiting for you.

Betsy 

Karma76

Today is my sister's last day of chemo!!  20 weeks my my, only 41 minutes and counting left.....

Titan

ljh58,, you are AWESOME!  You made my day with the wine article!  But you know..I don't care what the studies are on chocolate..never giving that up.

Remember the cravings back in the "chemo days"...I couldn't drive by a Wendy's without going through the drive through.  I even sent my dh or whoever else was "watching" me during chemo out for Wendy's....that was the AC...when I began Taxol I turned to Subway......I still like Subway but the thought of eating anything from Wendy's makes me want to be sick....I hope I can go back there someday...just not now!  Maybe it is just the association with chemo that makes me feel sick..I don't know.

My wig is really bothering me today...I''m ready to go topless.....I have it as loose as it will go but it still feels tight....must be all the hair coming back...NOT!

Lena

Hi girls,

 

I know, haven't been around much lately, but yeah, I needed time to "just recover." No, I'm not 100% "back" yet, but at least by now (4 weeks PFC) I've finally made some NOTICEABLE progress in the Up direction.

 

1. GI Tract is fully back online. I'm back to just plain ole "Morning Mouth" (which goes away when I have my coffee/brush my teeth); no more constant Sewer Mouth, appetite is back and food is food again. Bread included (I couldn't eat bread at all for weeks because it felt like cardboard, it was totally revolting).

 

2. I only have to spend maybe 40-50% of the day lying on the couch (it was up to 75-80% at the "height" of it), and, when I AM up, it's better -- and when I get up, it doesn't feel like I ran around the block anymore.  It's still hard to walk UP the stairs, but I can do it, and take the garbage or laundry DOWN better now, and I no longer feel like I'm going to collapse or drop dead from going to get the mail or move the car (we have parking ordinances here: Mondays and Fridays at 4 PM I have to play "musical cars").  I can even go for what I call "half a walk" now. I can also carry my iBook around again too -- I took it with me Tuesday for my MUGA scan, and yesterday's bone and CT scans too. I originally it with me for all my doctor, test and scan appointments until my third chemo, but then I stopped except for the actual infusion days, because it was too tiring to carry it. Anyway, one more PFC scan to go (Tuesday morning PET scan), and yes my iBook will be coming with me.

 

3.  I sleep through the nights again, mostly anyway. Sometimes I wake up from hot flashes or to pee, but I go back to sleep: no more getting up at 3-4 AM wide awake and unable to get back to sleep. Still taking naps during the days at times though, but not as many.

 

4. I wasn't even looking for this because I was deliberately AVOIDING looking closely at my head, but couldn't help but notice it spontaneously a couple days ago (against a dark blue bath towel after a shower): I'm Fuzzie the Moldie! Um, Fuzzie the Moldie was what I named my "pet" Aspergillus niger mold before it sporulated back when I worked as a microbiologist at this one place, and when I saw what I saw on my head a couple days ago -- colorless-whitish fuzz on my head -- it immediately reminded me of mold mycelium! OK, I'm light years away from being able to open my apartment door without my wig on, but hair growth has to start sometime, somehow. I'm just shocked I noticed it this soon. I figured the color would have to come back or it would have to get to be an inch or two long before I'd notice it at all -- but okay, I noticed it anyway.

 

5. If I carefully divvy up what little brainpower I've got, I can actually get something done -- I can write a COUPLE of GOOD emails or a forum post for the day, OR I can spend some high quality time with my sims. Mostly I've chosen the sims and my email though...LOL...But I still have to make the choice, can't do both yet, and I have yet to regain my full former mental focus/eye for detail (so...sigh...can't go back to my Sims object hacking yet). I wish my brain was coming back faster, but I guess I should be glad I'm getting ANY of it back -- and that the morning coffee clears up SOME of the fog!

 

6. My libido is coming back, too. Definitely not as prolific as it was pre-chemo but more than I've had in months. Still not making the "you won't be able to walk when I get through with you" threat to my Pack Rat, but when he called last night I was definitely motivated to make some risque suggestions and "I think I'm ready to try..." (never mind the specific details) heh heh heh. He was very pleased to hear about this (LOL!)...and...he'll be here tonight.  >;-) So I'll see how much energy I actually have.

 

Okay, so I'm finally actually climbing out -- let's see what's doing with the rest of you...

 

Dawn:  I'm glad your surgery went well -- and how do you feel NOW? Um fainting, though? :-O I've never fainted before....dare I ask what it's like -- or is it like BC, and can't REALLY be understood by anyone who hasn't experienced it for themselves? Oh, and today's Friday -- you're coloring your hair today? So wow, you've got enough hair to color? That's great.  I wasn't coloring my hair prior to chemo (er, well, I used to be a bottled strawberry blonde a very long time ago, but stopped in my late 20s because I got sick of being a roots-slave, then decided I liked my natural color better!) -- so I don't plan on coloring it post-chemo either, unless it comes in all grey or something. My natural color was chestnut brown, and didn't see any grey at all until my early 40s -- by the time of my diagnosis at 47 (turned 48 in June) I still only had a very few scattered grey strands here and there (not enough IMO to justify going back to being a roots-slave: I'd need to be pushing salt-and-pepper to do that again). But right now all I have is the colorless "mycelium." Even if I wanted to dye it, I don't think there's enough of it to dye. I wonder how long it'll take for me to notice any color at all to show up naturally (whether it's my former color or grey).  To answer your questions about Tamoxifen SE's -- the only real problem I've had so far that I KNOW I can point my finger at the Tamoxifen was that, OMG, horrors, my migraines came back!  :-O I had to go back on my old anti-migraine meds to get rid of them. That helped (no more migraines since going back on those meds). I have major power surges (hot flashes) too, but I was getting them from the chemo, and since both my oncologist and the chemo nurse told me it would take up to *6 months* for all chemo side effects to go away, and I'm only *1* month PFC, for all I know, my current hot flashes could still be from the chemo just as easily as the Tamoxifen, which also has hot flashes as a side effect. Out of curiosity, I'll still mention it to my oncologist at our next appointment (Sept 10th).

 

Linda: I hope your blood is OK, and OMG on the business about locking yourself out of your daughter's house bald and hatless! :-O If you and yours are able to laugh about that, more power to you. I'm afraid my sense of humor just isn't up to this kind of height! Personally, even though I don't even own a bathing suit (I don't have a good enough body to wear anything like that in public) -- if I had to choose between locking myself out bald/wigless but with my clothes on, or locking myself out longhaired but stark naked, I'd take longhaired but stark naked in a flat nanosecond. The only time my head is uncovered is when I'm inside my apartment. Not just in the building, but in my actual apartment. 

 

Tammy: HAPPY BIRTHDAY.  :-D

 

Titan:  Guess I don't gotta say I could never do what you did riding in the car with your husband, but it's so hot and humid here (plus having all those hot flashes doesn't help) the first thing I do when I get back in my apartment, when I have to go out, is take off my wig, and yes, it feels good when I take it off. Nope, no wind blowing through my fuzz, but the air conditioner is fine.  Anyway even with the AC, it's too hot to wear my scarf even (after the initial cooling-off from wig removal, I get hot again -- and it's so gross, a sweating bald head! YUCK!). I used to wear my scarf in the apartment at all times except for (obvious) taking showers, but it got too hot/humid and even that felt too yucky sticking to my head, and it did, even when I wasn't actively having a hot flash. So the last couple of months I've "had to" go bareheaded in my apt full time, not just for my nightly shower. (I've always been an evening shower taker, so this is normal for me.)   :-O  OH NO about your other breast! That totally SUCKS!  :-*(  Oh, and while I love red wine, I still wouldn't consider myself as "missing out" on anything if it turns out I don't have to do rads...I can still drink red wine ANYWAY, right? LOL. 

 

Amy -- that's WONDERFUL that you're feeling so energetic only two weeks PFC! Although I'm feeling a LOT better now than I had been, even now, four weeks out, I'm still not actually energetic or even feeling fully like myself again. Well, that's great for you being so resilient. :-)

 

ljh and stephanie -- Congrats on finishing, and how do you feel? I know you only just finished, but I hope you crawl out fast like Amy and not slow like me!

 

Pam  -- How are you feeling? Hope the SEs from the taxol and herceptin are at least tolerable. And yeah, I just BET you can't wait to be done already! Enjoy your trip to Maine. I canceled my annual summer week in New Hampshire (my Pack Rat's "nest in the north") this year because of the chemo. I couldn't figure out how to schedule a week away when I was feeling like complete crap for 2 weeks of every 3, and had to be here for all the treatments and doctor appointments, plus I couldn't deal with the idea of the 6-8 hour drive up there with the chemo brain either. 

 

Betsy, Titan, Laura -- good luck with the rads. I hope they're not as bad as chemo! (Um yeah, I know, what could be as bad as chemo?!) 

 

Also, Betsy, sorry to hear you have the mouth pain/eating issues. :-(

 

Chelev -- congrats on the ACS win.

 

If I missed anybody, I'm sorry -- and hope you're feeling as good as you possibly can. I'll try to come back sooner so maybe it won't take three hours to catch up with you all and catch you up on me.

 

~Lena.

 

 

 

josybee

Hi Ladies, Just wondering if anyone can give me some info on Taxol. I started AC on 7/1 had 4 treatments and next week I am starting Taxol every other week for 4 treatments with Herceptin weekly for 8 weeks, after that I will be on Herceptin one year every three weeks. My last AC treatment was last Wednsday and I am finally starting to feel better today (felt lousy for over a week this time) I am just praying that the Taxol isn't as bad as AC. Thanks

JudyNaomi

Titan, Betsy, thanks for your postings - wishing everyone a good weekend!!!

Judy x

comingtoterms

Josybe, as with all the drugs, side effects are as different as we are - I personally had a much tougher time with the taxol than with the A/C.  This was mostly related to the bone/joint pain.  For the most part, it seems that most women consider taxol to be "a walk in the park."

Dawn, I had my exchange on Tuesday and am still exeriencing significant pain.  You are a week ahead of me, and I wonder how you are doing?  Can't wait till the bandages come off on the 27th - trying to imagine what i will look like - hope all's well.

Glad to have you back, Lena!!  Tammy

lollys

Betsy --had some labs this week for my port removal next monday--I too was disappointed that my labs are still low--WBC 2.4 andHgb 10.1--thought the WBC should be higher and they are usually the first to go up--Hgb takes a while--was unsure if they still wanted to take me to surgery on monday but onc. said it was ok --still waiting to hear fromsurgeon but guess iwill still have it done-- guess that is why I am still getting tired and need naps--how are you doing with rads--

love the info on wine--havent had any and would love to  so maybe I will this weekend--

hope all is good with everyone --have a great weekend to all--Laura 

BetsyBuzz

Josybe- I'm with Tammy on this front. My triage nurse warned me (the only one) that not everyone has a cake walk with Taxol. TG - I would have been really depressed otherwise. It was not easy, but you can do it, hopefully you won't experience the joint/bone pain that Tammy & I experienced. Taxol also did a number on my WBC, so I ended up needing two neulasta shots. They swore to me I wouldn't need anymore after A/C. They lied!

Laura- My WBC was fairly low too, almost 4 weeks out. I thought they were reading the wrong chart. My onc was not concerned, he said shortly your immune system will kick in. I am so looking forward to getting my port out on Tuesday.

4 rads down..only 29 to go. The daily commute to and from the hospital is what is going to kill me, not the Rads.

I'm off to Seattle for a weekend get away. Take care all.

PS Lena- glad your back..man can you write. 

josybee

Comingtoterms & BetsyBuzz, Thanks for the info. When I asked my onc nurse about Taxol she if I didn't have any problems with AC the Taxol should be easier. Actually this last AC took me a little longer to recoup than the first three. As far as the Taxol and bone/joint pain, I had a lot of bone pain every time I had the Neulasta shot ( which was the day after AC 4X)  It mainly bothered me at the reconstruction site the most, had to take pain meds. ( I had left mastectomy with tram flap reconstruction)  They said I will have a Neulasta shot after the 2nd chemo.  I am praying the Taxol doesn't affect that area so bad.

Anonymous

Hi Ladies - I'm sorry I've not been on here in a week.  After my exchange surgery I was feeling so good that I tried to get some of our "new normal" in to the last few weeks of summer for my kids.  We went to our neighborhood pool and they both had friends over for sleepovers.  We leave for the beach a week from today so I'm trying to give them a little of what they have missed this year.  I'm doing great, the exchange surgery was really very easy, I was off the pain meds by Wed. morning and I've gotten back on the treadmill the last few days, it's so nice to be rid of the "boobs of steel".  I tried to catch up on the past pages, but gee wizz you guys are busy.  I'm not sure I made it through all the pages.  TITAN - I did see that you had a scare, I wish I had seen that earlier, I hope you are doing OK today.  Still some side effects for some of you guys going on.  I hope they subside soon and that you can also find your "new normal".  I so wish that this all did come with a manual and that we could expect the same se, but unfortunately we are all so different that that is not the case.  We just need to keep supporting each other and offering what has worked for us so that others might try those ideas.  I wish that we all lived close and could meet up some time, I would so like to give you all a hug and thank you for the support you have given me through all of this.  Did we all finish yet?  I feel like I'm out of the loop missing that week.  I wish you all a great weekend. I have to get my hair pic posted on the "hair, hair, hair" thread next week after I get the second color on it.  HUGS, Dawn

Titan

Dawn..glad to hear you are having fun!  Yes..I'm having a little bit of a scare now ..hopefully the rod shaped microcalcifation is bening.  I have one cluster with 4 microcals..3 are benign for sure but one is rod shaped and so is suspicious because it is not like the others...either way I'm sure that I will have to have a biopsy.  The radiologist and technician really did not seem horribly concerned...they said that normally they would take a look in 6 months but didn't want me to worry for 6 months..I start rads in one week...I'm anxious to get it going.

Josybee  About taxol after AC   it was just different than AC  some things were different than AC...it is still chemo after all....don't think it is going to be easy or you will set yourself up for disappointment...some things were better some things not as good.  I had the Neualsta shot 8 times and I think I had more side effects from that than anything...but maybe it was a combination of the two...either way you are half way done and that is AWESOME!  AC was fairly easy for me...Taxol was about the same...only different..really makes no sense..Taxol takes sooooo very long to adminster...but it wasn't as scary as the adrimycim "push".  It just this clear stuff that takes forever...They give you tons on benadryl, zantac and of  course, more steroids...they also watch you very closely for a reaction to the Taxol.  If you are going to have a reaction it usually occurs within the first 10 min.  Once you get through that the next 3 (or however many you will have). they don't keep quite the surveilance on you as the first one.  They also take your blood pressure every 15 min. the first time because taxol can cause a drop in blood pressure...again, after the the first time...they may not check you as much...as once nurse told me..."as long as you are breathing you are ok"...This is not to say they weren't watching...they just knew I was no longer a newbie and would be screaming my head off of something was weird!

Dawn...my hair is growing some and it is coming in dark...which is good..one thing weird is that the nail on my little toe just fell off a couple of days ago.....very weird...!

Lena...good to hear from you....I enjoy reading your posts....your are an awesome writer...whenever I see that you have posted I sit back in my chair and take it all in...glad you are feeling somewhat better!  It will happen soon!

Betsy..glad rads are going OK for you,..I'm so anxious to get them started....just in case there are some microcalcifications in the right one too!

Titan

Here I am again!  Anyway..Lena...hope you and the Pack Rat had some fun....we NEED that...yes...I will say the word...sex...for some reason my DH thinks my kinda BALD head is sexy....one of his friends really likes it too but we won't go there...anyway....everyone seems to enjoy rubbing my head and I feel like how a dog may feel when they get their heads rubbed but actually I kind of enjoy it..weird I know..maybe all this happened when I stuck my head AND tongue out the car window that hot day,,,,Lena..maybe you should try it!

lindatwo

Lena...Glad to hear from you, I was really getting kind of worried about you.  Also glad to hear you are coming out of the fog.  Every once in a while now I kind of have a surge of energy and think, "Wow, I feel great!"  I guess I really appreciate feeling good now that I remember how crappy I was feeling for so long. My last chemo was June 11, so it has taken awhile.

Like Titan, my husband thinks my semi-bald head is sexy too. I am getting more and more brave about going without a hat or wig.  School starts on Monday, and I decided today to go down and get my office organized.  I decided to skip the head covering, and there were three teachers there organizing their classrooms.  I think they were kind of taken aback, but they were very gracious.  I have no bald spots left, my hair is pretty thick, but looks like a number 2 butch, and is salt & pepper.  (I have always colored it auburn.)  Anybody else still waiting on eyelashes and eyebrows??  I love the way the eyebrows are coming in especially thick where I need to pluck them!

Titan, It has to be nerve wracking going through the whole biopsy, etc. thing all over again.  I'm praying that it will be benign.  I'm sure they are just being especially cautious because of your history.

I think I need to go find my DH and take advantage of the increase in libido; Oh yeah, AFTER the wine and chocolate of course!

hrf

My last chemo was June 16. While my eyebrows thinned a bit, they stayed. But today, my eyebrows came out and my lashes are thinning even more. I had a few hairs on my head and have been anxiously looking for signs of new growth .... maybe a couple of sprouts here and there. But for the past few days, hair has been falling out - can't tell if it's the few that stayed or the new ones. What's going on?????? I started Arimidex 10 days ago. I'm starting to get very anxious. Will my hair ever come back? Will my eyebrows grow back now. I don't understand what's happening.

josybee

Titan, Thanks for the info, I guess I will see soon enough when I go on Wednesday.

JudyNaomi

Hi all, hope you are doing ok.

Today I was prescribed Prevacid for the heartburn - has anyone used it or heard of it? Any info would be great.

Titan - how are you holding up?

Enjoy the rest of the weekend, Judy xoxox

JudyNaomi

ljh58, how long are you out of treatment?

And Betsy thanks for all your responses.

Take care one and all...

Judy x

Titan

JosieB..,,please I don't want to freak you out...I too heard Taxol was going to be a walk in the park and it was better than AC but it still wasn't fun.....I think sometime that the drugs they give you are worse than the chemo itself...

Judy..I'm doing OK...I keep telling myself that THIS IS NOT A TUMOR..that in itself is a good thing..plus 8 rounds of chemo....it's just ONE calcification that they are concerned about...it's just the waiting to see the surgeon that is tough....he is on vacation this week...I guess that if it was horribly serious they would have urged me to go to someone else..I guess if it is malignant..from reading some of the IDIC threads that they will take it out and that is about it...I'm ;probalby freaking out about nothing

JudyNaomi

Titan - thinking of you!

Judy x

BetsyBuzz

Pam...are you done with chemo this week?

Dawn...glad you are enjoying the new girls and getting back to a "new normal". It was good to hear from you.

Hrf  - I'm still losing my eyebrows too! BUT I have peach fuzz...my dh confirmed it. So maybe soon hair will follow.  

Laura - good luck tomorrow getting your port out.  

I had a wonderful trip to Seattle. Got to visit my ailing Mom, it's her 85th B-day on Thursday. We spent the day with her and had a lovely time. It's such a joy to be feeling good again.

Judy - I haven't heard of your drug but I hope it works for you. My stomach as really improved over the past few days. I actually had some tomatoes yesterday...wow...did they taste good.

I hope everyone experiences feeling better each day this week.  

Betsy

lindatwo

Helen,

 I am going to be starting Arimidex, and it seems like I read on one of these threads that it could cause hair thinning.  I am concerned about that because although my hair has always been very thin, it is coming in fairly thick right now. Maybe you should ask your onc. if that could possibly be causing your hair loss.  Or maybe it is still the results of the chemo......I lost my eyebrows and lashes about 6 weeks AFTER chemo, and I may still lose my fingernails, they are rather funky looking.  WOW, will this never end for us?!

Linda

hrf

I think we are so focused on the last date for chemo - getting it over with, that we don't realize that the effects can go on and on and on. It's been 10 weeks since my last tx.....so if I deduct the 3 weeks that the chemo was doing its job, that puts me at 7 weeks later and I'm just now losing my eyebrows and still not seeing hair growing and in fact, losing the few hairs I had left. Friends and family say "it's over" but I don't feel it will ever be over. I will ask onc about the Arimidex - I did read on one of their information sheets that it can cause hair thinning.

JudyNaomi

Thanks everyone for all your replies. Betsy, glad to hear that you are eating more! I look forward to being able to write a similar post : )

Have a good evening, Judy xxx

JudyNaomi

ljh58, thanks for the information. I will give this new medication a chance and see how we go.

Have a good evening, Judy x

Titan

Betsy..like your new avatar!  My question is...which one is YOU!  HEE HEE!  Judy,,hope your new meds work!  I bet they will...Had first rads appt. today..will post on the rads thread.,.took my dd to college today..she is a junior..will take my baby! son in two weeks...what an emotional time!  1)  having to deal with that stupid rad shaped thingie in my other breast 2) both my babies going away to school or 3) learning to live with just my dh and myself at home...life is never stays the same does it...GOOD things,..like all of you here and my kids having a good college experiience and bad horrible things like breast cancer...oh well I guess adversity builds character...I would say we all have alot of that!

aris

I'm done!!!!!!!!!

Yay, I just got home from an incredibly long infusion. A 3 week dose of Herceptin and my usual Taxol. I had a lovely time and was just so so happy to be done.  Of course I go back in 3 weeks to continue the Herceptin through May, but it feels like I'm done. Closing a chapter, you all know what I'm talking about.

I ended up writing my nurse a nice thank you note and buying her a nice pair of earrings (with a gift receipt if she wants to return them).  She was touched by the gesture and I think she genuinely liked the earrings!  I have been blessed by having such a lovely nurse, it was nice to give her something.

Now I'm off to pack to get us to Maine for a few days tomorrow. My kids are beyond excited, (think acting very crazy), but that's good, they've had a tough summer too. It will be nice to be in a hotel, away from home, just relaxing. We're leaving my husband here because he has to work.

Thanks for waiting for me. I figure I have the next 4 weeks to recover a bit from the chemo before the side effects of the rads start to kick in. I start rads on 9/10.

 I hope everyone is doing okay and those of you who aren't done yet, it will come, the middle part is definitely the toughest. As my nurse said today, you do get an emotional boost from finishing, even if you aren't physically any better! 

Have a great day everyone.

Pam